We had C's local cardiac follow up today. I was happy to hear our cardiologist say "I've always advised families to wait, but if this valve continues to work like it is, I may have to change my thinking on that". I was less happy to find that C's heart rate continues to be low (resting 57ish) and beating in a junctional rhythm.
We're on a waiting list for a holter monitor. At this point we are looking to get some baseline numbers so that we can see if he improves over the next few months. If we don't see an improvement in the next 4 months, we may be getting a pacemaker. If the holter monitor shows any concerning drops or pauses, we may be getting a pacemaker sooner rather than later.
I asked Dr. Gellat if he thought it could simply be the size of C's heart causing the issue. While it may be the reason for the slower beat, the fact that it is beating from the junction instead of from the sinus node indicates there is an issue. The good news is that the EKG does not indicate heart block. When the junction node fires, it does trigger the sinus node and both the atrium and ventricle are beating.
It will be interesting to see if C's increased heart rate will lead to sinus node taking over firing. We were seeing normal sinus rhythms in the hospital when C was up and about. Even when C's heart rates are in the mid to lower 40's he still profuses well.